My cancer-battling journey: What was it like to lose my hair to chemotherapy?

When I first told a friend who asked that I had to go through chemotherapy as a treatment to fight lymphoma, his first response was, “OMG! You’re going to lose all your hair!”

(This, my friends, is an example of an inappropriate response to any cancer patient/chemo patient.)

Yes, I was aware that I was going to lose my hair. (And brows. And lashes.) But I do want to let you know that “chemotherapy” is not just a single type of drug, but is made up of a customised “concoction” (if you will) of drugs depending on your condition. Not all drugs have hair loss as a side effect. And whether you lose your hair or not doesn’t indicate whether your chemotherapy is working (to kill cancer cells) or not.

While the stereotype of a cancer patient is that of a bald person, I also would like to point out that chemotherapy isn’t the only form of cancer treatment, but it is (I think) the only cancer treatment that will cause hair loss. This happens because chemotherapy drugs kill off all fast-growing cells, which cancer cells are; these fast-growing cells also include healthy hair follicles, among other cells.

The fact that chemotherapy kills off plenty of healthy cells too (yes, it’s not just healthy hair cells that it kills) means that there are actually plenty of other more gruelling side effects that a chemo patient has to go through. Most of the “pain” I suffered during the course of going through chemotherapy wasn’t related to the hair loss at all.

But this being said, I think the hair loss part of chemotherapy was the most emotional, especially as a girl who have had long (and voluminous) hair for most of my life. It was really my crowning glory.

To prepare myself for the inevitable hair loss, I asked my friends who own Ecorganics, an organic hair salon to pop by my place to trim down my very long hair (that I kept for the wedding that concluded 1 month before I was diagnosed). They gave me a pixie cut that I liked.

While the fact that shorter hair fell off, instead of chunks of long hair, made the process less painful, it was still very painful. When the hair loss kicked in about two weeks after my first cycle of chemo concluded, I was devastated. I woke up seeing my pillow covered with hair; I try my best to wash my hair gently so less would fall out.

But you know what? Upon retrospect, it really doesn’t matter. Because everything will eventually fall off. Yes, everything. So there’s no point in trying to “preserve” them or to delay their fall. The hair follicles die, so even wind blowing against your face will blow away hair. Eating was very troublesome for me, because I would have hair falling all over the food I was trying to eat. And this really didn’t help when chemo causes nausea and poor appetite (and other eating issues), while I was also feeling depressed and frustrated that I have hair falling into my food.

Eventually, I asked my friends from Ecorganics to pop by again, because I decided to shave everything off. And if anyone who is going through chemo is reading this, trust me, this is the best decision ever. It was liberating. Because I no longer had to watch my hair fall off slowly.

I’m thinking it has to do, in part, with taking over “power”. When I was battling cancer, I frequently felt helpless and powerless about my own body. Nothing functioned properly anymore when I was going through chemo, and I couldn’t even be sure if the chemotherapy drugs were doing their work well. There was a deep sense of helplessness and vulnerability during this period, and I guess by making my own decision to shave off every strand of my hair helped me “reclaim” that power, and it felt good.

(But I really need to mention that at my weakest, I felt God’s mighty strength the most. In my desperation, I called out to him, told him that I was so scared because nothing was within my control anymore. And He gently told me “But aren’t you glad that I am in control?” Indeed, this was an experience that truly taught me what it means to “let go, let God”. May I never forget this experience.)

Besides the psychological liberation, it was also a practical thing to do. I no longer have to fuss over hair falling everywhere in the house and into my food. And when you have something as huge as cancer to battle, you’ll be happy that you don’t have to worry about “bad hair day” (and I’m not kidding, ok?)

When every strand of my hair fell off (yes, lashes and brows, and other body hair you can think of – some of which I actually don’t miss very much), I felt depressed again. I looked like an alien without my lashes and brows, especially. But I consoled myself by telling myself that I looked very “haute couture model”.

(If I had taken any photos during this time, I would have deleted them. Because it saddens me to look at them. This is why I have no photos to share with you.)

As I went through the later cycles of chemotherapy, which I really didn’t take very well to, and was suffering from very intense side effects that tormented me badly, the hair issues were really the last thing on my mind. (So, if you’re reading this because you’re going to go through chemo and are worrying about your hair, really, it’s the last thing you would be concerned about eventually. And remember, hair grows back!)

When chemo is done, don’t expect hair to grow out immediately. It takes some time, and it may be slow. It took me about 6 months to grow out my hair to a length that I didn’t mind going public with.

Here’s a photo of me going out to the public without my wig for the first time after I was done with chemo. (I could have embedded the photo directly from Instagram, but somehow I’m having some tech issues with it.)

short chemo hair

Before I went public with this ultra-short ‘do, I have been wearing wigs. The thing about wig is that it can get uncomfortable after a while, especially when it’s sitting right on top of your bare scalp. It can also feel warm, and you need to maintain it (wash it, brush it, dry it etc.)

But the fun part is when you get to try different hairstyles every day (if you don’t mind people asking you if you’ve cut your hair or feel puzzled why your short hair grew out so quickly.)

I brought two different wigs to my Taiwan trip and changed them according to my mood:

short wig

long wig

The lashes and falsies don’t take as long to grow out – they came out completely after around 2-3 months if I didn’t remember it wrongly. (FYI: now that your lashes all grew out together, they have the same growth cycle, which means they will also fall at the same time later on too. So it’ll take quite a while before they grow and fall at different rates.)

The hair growth will continue, but I was told that your hair texture may differ. I’ve seen other chemo patients who have curly hair after their hair grew out again. My hair grew out very, very soft at first (like teddy bear fur) but after a year or so, went back to being wavy (I had naturally wavy hair before chemo), so perhaps this was why I didn’t see a lot of difference.

I enjoyed my pixie styles and styling them in cool ways at first. Here’s one of my first attempts at styling:

styled hair after chemo

But it will eventually become a nightmare. This is because the hair at the back of my head grew out a lot faster than the sides. (Tip: Wearing a hair band helps.)

styled hair after chemo 2

I was trying to grow out my hair and was told by several hairstylists that I will have to keep trimming till they grow out at the same length before I can have any cool hairstyles. If you’re reading this and are trying to grow out your hair post-chemo, my advice is: be patient and keep trimming. The good thing for me was that, since I’ve almost always had long hair and never had anything shorter than a bob, it was the best time to try out something new. I would have never volunteered a pixie cut in the past! Thank goodness I think I look pretty ok with it.

One final thing I want to talk about is “awkwardness” related to your hair. For me, I don’t like to make first conversations around my medical history, so I obviously don’t talk about my hair. When I was wearing a wig, I had several people I met at events asking me about my hair, saying that it’s a good cut and asked where I got it done. (AWKWARD.) And then when I went public with my (new) short hair, I had a lot of other people (some of them remembered I had very long hair) asked what made me cut my hair soooo short. (VERY AWKWARD.) You know, the thing is that, if I tell them honestly: “Oh, I didn’t cut my hair, I lost my hair to chemo,” it will really make the person who asked look like a jerk, and he/she can only awkwardly reply “I’m sorry! I didn’t know!” and feel very embarrassed about it. I didn’t want him/her to be in such a situation, so I try my best to deflect the question most of the time. What usually work: “Why leh? Not nice huh?” and then change the topic, or laugh, and then say: “Eh! Tell me about your trip!/Where did you get your dress from!” depending on which one fits the situation better.

By the way, your hairstylist is definitely going to ask about your hair. Some will frown and ask you how you land yourself such a bad “cut” or why you wanted to cut it so short. These are times I’ll tell the truth (I had to) but it will get quite awkward too. Because usually the replies will include: “HUH! But you’re so young!”, “Were you very sad to lose your hair?”, “Poor thing!”

Anyway, these are all I have to share about hair issues related to chemo. If you want to know more because you’re about to go through chemo, are going through chemo, or know of someone who is and wants to help him/her, feel free to drop me a comment/email. If you’re just kaypo, you can also drop me a comment/email, but I’ll only reply depending on how appropriate the question is.

And I’m ending off with the latest photo I have of my hair now, 1.5 years post chemo. (Wished it wasn’t that grainy. Oh well.)

hair after chemo 1 half years

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Food & Nutrition Tips Based On My Chemotherapy Experience

Like it or not, many patients experience loss of appetite and change in taste buds during chemotherapy. As much as I’m a foodie before I fell ill, these happened to me too, and was probably why I lost 10kg after my chemotherapy treatments ended.

They’re both side effects of chemotherapy. The loss of appetite could be due to nausea, or just generally not “feeling” like eating, and also because of oral ulcers that tend to occur especially with aggressive chemotherapy.

In my case, my chemotherapy doses increased with each cycle until my fourth one. They couldn’t increase it anymore because my body wasn’t able to hold up to the strong effects. With each cycle, I got worse oral ulcers despite gargling with salt water regularly, and keeping my oral hygiene in tip-top condition. We are talking about ulcers that fill the entire mouth and tongue. It was impossible to even talk or open my mouth, let alone eat.

Taste change on the other hand, is really peculiar because medically, I don’t think there’s a clear reason for it. It could be because of damage to oral cells. However, food tasted really odd to me, they sometimes tasted bitter, or with a weird sweetness, or just… strange. Generally, nothing tasted particularly good.

It could be psychological, but I felt like puking whenever I smelt hospital food. So those days I had to be in the hospital (which was about 7 days per 3 weeks) were the days I struggled most with food.

All the above-mentioned problems, coupled with less options for food (everything has to be kept low-bacteria, that means no raw foods, including raw vegetables, and thin-skinned fruits like grapes, and no yogurt and mayonnaise – the former is made up of (good) bacteria, and the latter of raw eggs). My parents cooked every meal for me, washed everything properly and made sure they were cooked thoroughly and that I ate immediately so as to make sure they weren’t contaminated.

Now that my taste buds and appetite are more or less back to normal, I thought I’d share some tips and thoughts that I had during that period. Hopefully this is going to benefit those who are going through chemotherapy now and feeling a bit lost, or for those who are cooking for loved ones who are going through chemotherapy.

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  • Distract yourself during meal times. When I first got home after I was diagnosed and went through my first chemotherapy cycle, I was still in a state of distraught. So were my family. Everyone was so concerned that when I ate, everyone gathered around to “watch” me. I soon realise that this wasn’t a “good” way to eat. My trick was to either eat with someone and chat, or eat while watching a show. The idea is to get my mind off the food and make the motion of feeding myself go auto-pilot, and focus on something that’s engaging instead. The shows of choice during that time? Masterchef (weird, I know) and Kang Xi Lai Le.
  • Eat multiple meals in small portions. Food became something intimidating to me during that time. When I saw too much food on the table, I’d feel like puking. It helped when my parents started serving food on very small plates for me. For instance, I may be eating just a small slab of fish and a few pieces of vegetables for lunch, but may take a small bowl of red bean soup during tea time.
  • Eat slowly. I typically take about one and a half hour to finish one small bowl of porridge. But this makes eating less intimidating.
  • Don’t think, just eat. Mentally, it’s hard to swallow food especially when you don’t have appetite. I didn’t even feel hungry most of the time. However, I had to logically tell myself that I HAD to eat to have the energy to fight an ongoing battle. So, I dissociate food with enjoyment, and think of it as a necessity. I reminded myself that all I had to do was to put food into my mouth, bite and swallow. Win.
  • Plan your meals. Because you can’t eat as much as you used to, it’s important to pick the “better” things to eat. It is very important to have sufficient protein input every day (at least 7 servings). I get most of my protein in the form of fish, tofu, eggs and beans. On days when I REALLY can’t eat anything, I drink a can of nutrition supplement called Ensure. By the way, I still have several cans that I stocked up but never drank. If you know of anyone who needs it and particularly if they can’t afford it, please let me know and I’ll be pleased to give them out for free.
  • Make your food interesting. There were certain ingredients that can instantly perk up my appetite. I’m not sure if it works for everyone, but I thought I’d share. Salted butter was a life-saver for me. I put that onto bread and into mashed potatoes, and they instantly tasted better. You can get the individually-packed ones from supermarkets to ensure hygiene. Adding a touch of lemon juice to fish also made them taste better for me. Another way to make food interesting is to change up the way you present the food. I quickly got sick of having steamed salmon, but when my dad started grilling them and putting them into burger buns, it became more appetising.
  • Fruits and fruit juices work. I could never get enough of fruit juices and particularly coconut. The coconut also offers a good source of energy and fats, which are good for the body.
  • Prepare liquid food. These were my ammunition on those days when I my mouth was full of ulcers. My best girlfriends showered me with lots of baby foods that really worked out well because they’re easy to eat, nutritious, and are soothing on the ulcers because I chill them in the fridge before eating them. They were the only things I ate during those days I have ulcers, because it hurt a lot even when I ate tofu. You can also consider soups.
  • Find ways to curb nausea. My girlfriends also supplied me with sweets and lollipops that helped to curb my nausea. One of my girls bought me organic mint tea, which I find useful to stop nausea. Whenever I feel nauseated, I also quickly lie down and breathe deeply. The doctor prescribed me medicine as well, which I only take as a last option.
  • Ask for medical help. Two weeks after my last chemotherapy, I was experiencing extreme pain because of the mouth ulcers and constipation. I had a great fear towards food and eating too, firstly because it was just too painful to eat, and secondly, I knew that if I ate, I had to go to the toilet, which was super painful as well. Those were very horrible days that I still shudder whenever I think about them. I was admitted to the hospital for neutropenia, and during that stay, a pain management doctor was called in to help. I was prescribed mylocaine and morphine – which were really my magic potions. I personally don’t think we should use pain relief drugs readily, but speak to a doctor to see if he/she would advise it for your case. These drugs made my life a lot easier.

I was really very, very lucky because I have a strong cheer-leading team. My parents took turns to prepare all meals for me. It wasn’t easy and I know it’s rather stressful too, but they did this with so much joy and with a heart of service.

My brother constantly did research to find out what foods I could eat and to find ways to make food more interesting for me. He also spent time during meal times to chat with me so I could be distracted.

My girlfriends pampered me soooo much: whenever they know I like something (that I was allowed to eat), you’ll be sure that I’d be showered with it.

And a special mention for my dad and brother, who cooked san lao hor fun and mushroom risotto using ingredients that I was able to eat, just because I said I had a craving. During those times, I had no appetite all the time, and having a “craving” was very rare. But what’s more priceless was their readiness to indulge in my craving.

Finally, a word for you, if you’re going through chemotherapy and struggling with food. Don’t be depressed! Every morsel you consume is one mini victory. Take it one spoonful at a time. Try different ways to manage the issue. Get help – speak to a doctor or a nutritionist. And don’t feel bad about it – your body’s like a battlefield now and it’s normal for you to feel horrible all over. Keep your eyes on the goal. And all the best!